Access to healthcare

Branko recently broke his jaw and needed medical attention.

He asked himself: should I tell the doctor or not?
He didn’t want to. He was frightened they wouldn’t treat him.
His friend, an activist within the HIV community, persuaded him that it was right to be honest and to disclose his status to the doctors. His friend argued that it would not jeopardise his chances of treatment because the doctors had a duty to treat him.
They refused to.
He could not get treatment.

So, this guy you don’t know, recently last summer he had a situation, he got beaten up. He’s HIV positive…
I always used to tell him it’s a nice thing to tell doctors and dentists. It’s nice to tell people straight out honestly “I have HIV,” so they know right away what they’re dealing with. So it’s all honest.
And he always opposed this idea of mine. “I don’t want to talk, I don’t want to say anything to anyone. What do I care, it’s their duty to protect themselves,” and so on.
And he’s right and to some extent I’m right.
But then it became a great need because now his jaw was broken. He decided after all to be honest and say he’s HIV positive, it was at the Dentistry Faculty.
Back in 2000, when my jaw was also broken, I told them honestly. I was admitted but with difficulties. All the senior professors turned me down, but a young doctor accepted to simply tie up my jaw. I didn’t need surgery.
But this friend had a worse time than me and this was in 2007.
None of them wanted to operate on his broken jaw, because he said he was HIV positive. They had a team meeting to make the decision on this patient; who would take him over and who would do the surgery. In the end they told me they couldn’t operate on him. We were rather shocked. Our doctor XXX, because he’s usually a rather phlegmatic person, and somehow flexible, he can understand everything, he is full of understanding, especially for his colleagues, for the first time he was I can say a bit angry, he’d had enough. Because this is happening now, in 2007. That’s when it happened, some twenty days ago, a month at most, when he was rejected by the doctors. And we were all a little surprised, we didn’t expect after so much talk and so many years of talking. So I didn’t expect something like this to happen to him at all.
Can you imagine how his family is disappointed now too. But they are also [disappointed] in me too, because somehow it all turned out in the end like: “XXX, you advised me to tell them and when it comes to some critical medical procedures like an operation and something like that, be sure to tell them,” and he did. And I’d always thought he’d be accepted like I had been. Now I just don’t know.’ (Sandra)

Although it is against the professional code of conduct and against the law, a number of medical workers still refuse to give medical care to PLHIV. As Branko’s story shows. Barriers to access remain particularly severe in surgery, gynaecology and dentistry. Tired of this, many PLHIV, like Branko, Sandra and Jovana, struggle with the dilemma of whether to tell medical staff that they are HIV positive.

If I go here and say say [I have HIV], then I get: “Well, you know, we don’t have sterilised equipment at the moment.” or “There’s no water.” Then “I’m in a hurry.” Then: “Come back another day, let me call you back.” When he says “Let me call you back.” I know immediately he won’t see me… So you go and say my tooth aches [and not disclose status and they treat you]: but I don’t think that’s right because then we confirm some stereotype story that all of us who have HIV want to infect others. All the people I know, 100% I know none of them wish to infect someone else. But when something like this comes up… Then you say to yourself: “Alright then! Just go and get it done, don’t say anything!” (Jovana)

All the participants in the study want to be honest with medical workers about their HIV status, but they also want to get treated, as any patient deserves to. So some PLHIV do ask: how can they demand that we are open and honest, if the doctors with all their education to care and capacity to protect themselves still refuse to treat us?
Explicit discrimination appears to have become less common over the course of the research. However as Jovana’s experience illustrates indirect discrimination, where medical workers deny treatment in more subtle ways, persists.

Common excuses:

• ‘There is not enough space for you;
• I don’t have the knowledge;
• I can’t disinfect the equipment’.

Dejan lives outside of Belgrade. He has been turned away from each primary health centre in his area because he is HIV positive.

I try to do whatever they ask of me, but sometimes it’s very hard ‘cos really no one here in Yugoslavia, at least 90%, with exceptions, they don’t give you the time of day, as soon as they hear you’re positive, it’s like you have the plague, right?! And you’re simply so discriminated that… In a year, we have around 8 GPs in XXXX, I went through all of them, no one wanted to keep me as their patient. Either for this reason or that…

What reasons do they give?
Well… for example there are too many patients, one gave that as the reason; the other one: she doesn’t know about these things, she has never been interested in them so she doesn’t have a clue and she doesn’t have the will to keep learning; and the third one also said the same thing. (Dejan)

Dejan has also been trying to see a dentist, as PLHIV commonly face problems with their teeth. He has not been able to see anyone locally. Instead he has to travel to Belgrade.

‘They don’t dare touch me in XXX because of my illness, that’s why they wouldn’t pull [my teeth out]…

What do they say, why won’t they?
They say they can’t disinfect the tools afterwards…’ (Dejan)

Not my responsibility

Some PLHIV found that despite their concerns medical staff appeared willing to offer care. However their attitude changed when it came to actually conducting any intervention. Sandra’s account echoes many of the other participants’.

At first contact they don’t react, when you tell them “I’m HIV positive”, they’re not surprised but they have that… “alright, that’s normal”. They have it… but when it comes down to an intervention when they have to make contact, then they start passing the ball a bit more to a colleague and so on. That’s what you notice. (Sandra).

Tanja needs surgery but she can not find someone who is willing to operate on her.

‘My gall bladder started, the gall bladder started excreting bile, and I was as yellow as a canary. But no one would operate on me! We have a big problem, no one will operate on me, no one’s interested in operating on me!...
My life’s hanging on a thread because of this gall bladder which is full of stones! It’s not 1, 2, 3 but a whole quarry! It hurts so much. It really hurts!... And they kept searching for a surgeon for me, no one came to see me, no one came! (Tanja)

Healthy treatment: the same rights as other patients?

Amongst those who do get treated, some experience poorer treatment than other patients. PLHIV interpret this as further discrimination.

An acquaintance was supposed to do an ultrasound of the upper abdomen, with a referral from a doctor in Belgrade. He went to get it done and the doctor who was meant to do it, when she saw the code B20 (HIV), she was horrified and wouldn’t do it; “Why don’t they do it in Belgrade?” and things like that… He says… she started putting gloves on… like he had the plague… I am saying that medical workers who don’t deal with this issue are very uneducated in this sense and very uninformed; they live in their own ideal world which doesn’t allow for a person like that, it’s something she doesn’t know about, [we’re a] marginalized population and she doesn’t want to deal with it. (Stefan)

There are clear procedures on how doctors and nurses should protect themselves in dealing with any patient. Being professional means being obliged to follow these procedures and not acting on personal prejudices within the work environment. For the latest information, consult the WHO guidelines.
Many PLHIV reported that medical staff commonly treat PLHIV as though they are unworthy of the basic rights entitled to other patients. This following case illustrates how this includes not only access to medical care but also treating people with respect and educating them about the choices that are available.

Nemanja went to see a doctor and took a friend with him who was also HIV positive and knew the doctor.

She went into the office with me and she was a bit more protective towards me, you know like… And the doctor sensed it and said : “Don’t you think about having sexual intercourse! Viruses mustn’t be mixed…” She could have said it in a completely different way, for example: “You are people with HIV…”, it’s my opinion that patients should be talked to like that: “If you decide to have intercourse there are condoms for protection.” And that’s it! And not: “Don’t do it under any circumstances’. (Nemanja)

An example of the distrust between some medical workers and PLHIV is illustrated by a recent request by another ward to the HIV clinic asking them to disclose all the names of HIV positive patients.

They’re always asking for it, the list of HIV positive people. I suppose to know them by their names, if they had a patient like them come, to know that they were HIV positive. They think that perhaps they’ll protect themselves better like that. They [the HIV clinic] always reply that, I know this because I was present at one of those situations, “You’re obligated to protect yourselves, legally, from anyone, and we are legally forbidden to provide names for you”. (Sandra)

I expect that you will treat me badly

In various ways PLHIV feel discriminated against in accessing healthcare and treatment. Trying to find or visiting a doctor can then become a scary experience. In particular if it involves accessing care for the first time or through a different doctor to normal.
PLHIV have become reluctant to access healthcare because they anticipate there will be stigma-related problems and this will be stressful and upsetting.

I haven’t been to a gynaecologist for a check-up since 2003. But I think I should. I don’t know. I have this… like I’m tired of it, like I’m already expecting some sort of a negative reaction from them. And then I try to find out or hear about someone who’s OK, a doctor without such prejudice and when I find out about it I’ll go for a regular check-up. (Sandra)

PLHIV may experience discrimination in multiple settings: their home, their neighbourhood, their workplace, on the street and also when they are unwell and need healthcare. These experiences are not felt in isolation but build upon one another accumulatively. As a consequence of previous experience some PLHIV anticipate that they will definitely encounter negative attitudes and behaviours in particular situations. This expectation can become a form of self-stigmatisation.

10 years ago I was told: “You’ll be kicked out of here, you’ll be kicked out of there!”, blah, blah, blah. I went to the Institute for Oral Surgery in Doktora Suboti}a Street, 10 years ago, not today. I told the nurse what it’s about, she just looks at me and says: “Alright.” The doctor saw me without any problem, he processed me like any other patient and nothing. And I discriminated myself by putting a label on myself. (Saša)

This is not to say that experiences of discrimination are imagined by PLHIV. It is instead to illustrate how the difficult environment in which people are living their life means that, for some PLHIV, their encounters are interpreted through the context of previous or anticipated discrimination. Their assumption is an internalisation of what is happening around them.
Most PLHIV have a very real fear of being discriminated against and are frequently in vulnerable situations. Both in cases of discrimination and self-stigmatisation medical staff need to be sensitive to how their actions, attitudes and behaviours might be interpreted. Care needs to be taken to encourage PLHIV to believe that there is no prejudice in the way that they are being treated. Treatment needs to be fair.

Access to healthcare – getting healthier?

Access and treatment for PLHIV appears to be improving. Though not necessarily representative beyond our sample, there has been a decline in the number of incidents reported amongst our participants over the duration of the research (2005–2008).
There are also instances of positive experience of healthcare access and treatment. These examples show what a positive impact it can have on individuals when they are treated fairly and decently as patients.

It was at the Institute for Blood Transfusion and the nurse was supposed to take my blood out to determine the blood type. There was a very nice, calm old lady who wanted to: she sat down, rolled up my sleeve and said: “Give it to me, give the hand over! Be still.”, and she put the needle in from the first try and she says: “Don’t you worry, just sit there for a few minutes.” And no problem, I was thrilled with her approach. (Tanja)

Marina recounts an experience she had:

The doctor who did that operation, he was very, very good to me, and I liked him very much because he’s… giving you some hope that everything will be alright. Another person who he also operated on, they were all very satisfied with him. …Some people are totally scared, they don’t want to know anything about that and they just want to avoid any contact, presence, things like that. But other people are open to life to everything, and they just... you know they do their job, they like to do that and they’re open and very communicative. (Marina)

Unacceptably, accessing fair treatment still depends very much on the individual as Sanja explains:

‘I went to a dentist, one rejected me. It was hurtful, he turned me down; he wouldn’t take a tooth out for me and then I heard about a young doctor who is quite a good man and I’d say: “I will call him now and I did and he says: “Come here, I’ll do it for you.” And he did (…) if I have any problems with my teeth I have a dentist now.’ (Sanja)

The question- how will they react to me? – is a scary one for PLHIV. The response of medical staff, however unjust this may be, is unpredictable. Fair treatment for PLHIV is not yet common practice. PLHIV are not confident in the system and with the professionals. In light of medical knowledge about HIV transmission risks and general protective standards, it is inexcusable for PLHIV to be treated this way by healthcare professionals.

You know, because you come to the doctor, to somebody who you should trust, who gives you some hope. But if he receives you without respect, without [acknowledging] how important it is for you, then he gives the wrong picture of his profession. He is not professional anymore. (Mašan)